Frequently not given answers

Written by Huib, published Thursday October 29th, 2015

Views: 2,434

When I was asked to give a seven minute lecture called Lyme for Laymen at the old school of a young Dutchman who committed suicide because of Lyme, I used the images of Hobbits. On the left side Hobbits that were eating, drinking and having fun. On the right side an exhausted Frodo leaning on his friend Sam on the slope of Mount Doom. I used it as a metaphor of the abyss in experience that I had to cross in seven minutes. It worked for the audience, who mostly came to enjoy a cheap meal.

“Questions. Questions that need answers.” J.R.R. Tolkien

Even though I wrote my book about Lyme for caretakers, in order to help them to better understand the experience and situation of their loved ones, I get a lot of questions from people with Lyme. Of course I do. I doubt if there is any other field that is so full of despair, insecurity and incomplete information as Lyme.

They say that in the land of the Blind, One-Eye is king. In our times, in which an abundance of opinions, sales pitches, myths and fake security finds its way as Truths through both mainstream and social media, understandably people try to find their own path and ask questions to whomever they feel might have them. I am grateful for that trust, but I cannot help you directly. Please let me explain why.

One of the reasons why I focused my book on friends and caretakers is that I cannot answer the majority of the questions that Lyme patients have themselves. My aim is to create new languages to enable helpers to start or continue helping, instead of providing a solution to Lyme itself. I believe this is how I can create more impact for a group than I ever could as ‘solution provider’ for individual people.

If you are a patient looking for answers, I can however direct you to sources and places where you can find others with the same questions. That will allow you to look for answers together. Hence this blog post. In order to do that in a clear way, I will cluster different types of questions that I’ve got so far.

Wouldn’t it be arrogant if I told you what to do? Besides that, how could I know what you should do? This is widely beyond my domain of expertise and I will not take any responsibility for your own choice of what doctor or therapist to go to, if you should take antibiotics or not, if you should buy this type of Rife machine or another. I only know what I have done and that all our journeys are individual and unique.

The only thing that I can wholeheartedly suggest to you is to trust your own intuition, to find a Fellowship of your own Ring that you trust, to continue step by step and to learn from your own and others’ mistakes.

Finally I would risk a $ 35,000 USD fine every time that I would suggest to you what you should do. You can read why in chapter 11 (the Union of the Five Towers) of my book.

Where can I find…?

“Hold the question in your mind, but lightly, like it was something alive.” The Golden Compass

A couple of weeks ago I posted a link on Facebook to an article that a Dutch professor in Neurology wrote on PEA, a natural painkiller which I mention in my book. I thought that would be helpful to people with Lyme finding their way how to deal with the relentless pain in their body. To some it was, while to others it triggered suspicion, helplessness and assuming that I knew where to buy it cheapest. Some people posted an old attack by the Union against Quackery on this maverick professor as ‘proof’ that PEA itself was wrong.

I was puzzled (and slightly upset) by these reactions. What I learned from it is to really stay away from any kind of solution and have the On Lyme Foundation research them, if patients report merits.

Do you know…?

“You should not have any special fondness for a particular weapon, or anything else, for that matter. Too much is the same as not enough. Without imitating anyone else, you should have as much weaponry as suits you.” Musashi

A pretty persistent assumption seems to be that I am a Lyme patient looking for treatment. So people start mailing me all kind of treatment options I could try. Although I’m sure that it’s all well-intended, please allow me to reflect on this.

First of all it seems hard for people to get that I am not a patient. I’m doing fine, thanks.

The reason that I made it my profession to do something about the mess in Lyme Lands is that I know from experience what it’s like to walk through them. After I cured myself I could have walked away. But I didn’t.

Did you know that the word “profession” actually means a “calling”? It is derived from Latin: “pro esse”. “To be (called) for”. I simply feel called to do this for a large group of people, mainly because I have experienced myself what they are going through and I believe that I can make this experience and my own talents useful to others.

Once the On Lyme Foundation is growing (and that is something you can actively contribute to by becoming a member) this type of information will be helpful, because we intend to do ‘user based’ research into all treatment or healing approaches and methods. To me, as an author focused on meta-thinking and communication, treatment modalities are not really helpful right now.

Do you want…?

“Life is a beautiful place, full of people waiting to be offended.” Anonymous

“To help me with my Twitter account? To listen to how my doctor offended me this time? To hear all details of my latest treatment or test results? To hear how awful my ex has treated me? To marry me?”

Uh… Nope. In case you think that I’m just joking: these are questions that have actually come my way after my book was published. And it’s only been ordered 500 times now… Help!

Of course I understand that people, who have sometimes been in bed for twenty years and have felt miserable and misunderstood, yearn for a ‘soul mate’. But if I had been the soul mate of everyone who claimed that I was, my soul would now be in a pretty shattered state.

My counter question: can you help me to help you?

“I’m not pretending to be a man of the people. But I’m trying to be a man for the people.” Gladiator

My aim is to move understanding and knowledge around Lyme forward and use it as a catalyst to transform the current disease system into a healthy one. To me, the fact that this fourty years old worldwide pandemic is still mostly hidden is a sign that we might need to change strategy instead of doing more of the same thing.

But first let’s shift the Lyme paradigm itself. You can support me here to sustainably continue my work for far too many people.

(Nederlands) Categorieën

"This book perfectly describes the plight of millions of patients, who suffer from chronic Lyme Disease in many countries all over the world."Prof. Christian Perronne, France

"This book is a gift of truth and passion to humanity."Mia Morales, Lyme patient, USA

"I received the book exactly on the day that I had decided to end my life. Huh?! Yep. I am 35 years old years and have been ill for 19 years. Now I know why: Lyme. Everyone should read this book!"Miranda, the Netherlands

"This book offers a new practical, human centered way of dealing with health information. It is also ringing a bell for the new time how to work together towards health and thriving."Kim Schimmler, MD, Germany

"This pioneer's work made it perfectly clear that, when "i" becomes "we", even illness becomes wellness."Frans Vermeulen, journalist, the Netherlands

"In his crucial work on Lyme disease, dedicated social researcher Huib Kraaijeveld does not pretend to have all the answers, but guides us towards asking the upsetting and essential questions."Prof. Cees Hamelink, professor Communication Sciences & Human Rights, the Netherlands

"This book reads like a thriller! It touched me deeply and I am sure it will change the course of history."Linda Graanoogst, journalist, the Netherlands

"Well, I am wiping my eyes and blowing my nose, while tears stream down my face. I guess that is a good sign. You hit the nail on the head claiming that Lyme survivors need 'understanding'. I would like my own partner to read this book."Anodea Judith, PhD & author, USA

"What an awakening perspective! Huib has successfully set a quantum leap for understanding and managing Lyme disease by common people."John Wong, bestselling author, Singapore

"A true and unpretentious caretakers' guide to understand Lyme. This book will help you to completely understand what your friend is going through; regardless of the symptoms they have. I wish it had been written ten years ago, because it can actually save lives!"Cheryl Versalle, Lyme patient, USA

"This book actually speaks to people beyond its target audience (caretakers of people with Lyme Disease): people like me who are not travel companions, but to whom it is not hard at all to have or develop understanding and compassion. This makes the reach of this book bigger, much bigger if you’d ask me. I am amazed a book can do all of this!"Saskia Steur, business blogger, the Netherlands

"This book reads like an exciting novel, were it not that it concerns a deadly serious issue. It calls to contribute and take care of each other and our world. Read, weep, feel and act!"Manfred van Doorn, leadership expert, the Netherlands

"A creative and very intelligent vision to dive even deeper into the world of Lyme, to look at yourself, other people, but also the entire world around you."Friend of someone with Lyme

"The book indicates that Lyme disease can be a sexually transmitted disease. This will cause a tidal wave of awareness all over the world. Like the child in the old fairy tale The Emperor’s New Clothes, who exclaimed: 'But the emperor is wearing no clothes!'"Ola Aniel Petterson, STD campaign leader, Sweden

"What a brilliant sociological work! I am sure it will have much impact."Professor Neuropathy, Germany

"This book is a big eye opener. Both for friends of people with Lyme disease as well as for people with Lyme. Or for any other health issues, for that matter."Martin Möhrke, medical research leader, Europe

"I cannot read any other book for more than two minutes now, in this hell called Lyme. Yet yours I cannot stop reading! I should have put it away hours ago to clean the house. But I simply cannot stop."Ineke, wife of a husband with Lyme, the Netherlands

"This book is a delight to read. It offers soft candlelight and warm campfire camaraderie on an often dark and lonely journey."Laura Bruno, medical intuitive Lyme expert, USA

"A very honest and yet witty way of helping those with Lyme disease. This book is full of ideas on how to help your friend with Lyme, as a travel companion on this crazy journey called 'Lyme'."Lisa Hilton, Lyme advocate, USA

"Both the personal experiences as well as the author’s sharp mind turn this into an incredibly inspiring book that raises the consciousness of its readers."Kara, ex Crohn disease patient, the Netherlands

"Tempting, informative and eminently readable! Shifting the Lyme Paradigm is an absolute eye-opener for those who are not aware of what the journey of Lyme disease entails."Terri Mackinnon-Cross, CEO WorldLymeDay.com, Canada

"This book gave us the recognition and acknowledgment, which were like a band-aid on an open wound."Sara, Lyme patient, Belgium

"Very insistently written based on intensive, almost existential, personal experiences, this book also gives a clear overview of all relevant information for both patients and caretakers."Jan Eendebak, former chairman Lyme Foundation STZ, the Netherlands

"A relief to read, written by an expert who shares his dedication to his own path with us, and brilliantly written."Muna, mother of a daughter with chronic Lyme, the Netherlands

"This book made me realize that there is too little known behind the phenomenon Lyme. In a challenging manner the author provides understanding of Lyme disease and suggestions for tackling this disease. I have 'prescribed' this book to many of my patients and mostly astonishment was soon followed by recognition. An absolute must for anyone with (still) unexplained symptoms or the people close around them."Duco Kanij, osteopath, the Netherlands

"This book guides you through the labyrinth of Lyme swiftly, while it took us YEARS to even get this far."Eugenie van der Linden, ex-Lyme patient and therapist, the Netherlands

"This book is an absolute 'must read' for everyone! For patients, for family and friends, and for doctors who can finally learn that Lyme is more than what is written in their textbooks and that they should not be able to dismiss "unexplained" complaints as psychological too quickly!"Anne Fierlafijn, MD, Belgium

"Shifting the Paradigm of Lyme is not like any other book on Lyme that I have read. It appeals to a higher consciousness, and is analytical in an introspective way that is pleasant to read. This book is a friendly and warm reminder that no Lyme patient is ever alone."Thomas Grier, biologist, USA

"This book show how caring friends can intervene to provide succor and alliance ‘against the odds’ of a potentially serious and very complex illness that is still poorly understood by mankind."Kenneth Liegner, MD, USA